Treating The Tiniest Patients

Samuel Armas, a chattering, brown-eyed 3-year-old, has no idea what "fetus" means. Nor does he realize that he was one of the most celebrated in medical history. At a mere 21 weeks of gestational age--long before it was time to leave his mother's womb--Samuel underwent a bold and experimental surgical procedure to close a hole at the bottom of his spinal cord, the telltale characteristic of myelomeningocele, or spina bifida. Samuel's parents, Julie and Alex, could have terminated Julie's pregnancy at 15 weeks when they learned about their son's condition, which can result in lifelong physical and mental disabilities. But the Armases do not believe in abortion. Instead, in August 1999, they drove 250 miles from their home in Villa Rica, Ga., to Nashville, Tenn., where Dr. Joseph Bruner, of Vanderbilt University, performed a surgery bordering on the fantastical. Bruner cut into Julie's abdomen, lifted her balloonlike uterus out of her body, made an incision in the taut muscle, removed the fetus, sewed up the spinal defect and tucked him back inside. Fifteen weeks later Samuel Armas "came out screaming," says Julie.

That scream became a rallying cry for fetal-rights groups, which seized on a stunning photograph of Samuel's tiny hand emerging from his mother's uterus during surgery. Since then, anti-abortion activists have posted the image on dozens of Web sites to show just how real human fetuses are--even those that aren't yet viable. And that's just fine with the Armases. "We're very glad it's gotten visibility," says Alex. "That wasn't our fetus, that was Samuel."

No matter what legislators, activists, judges or even individual Americans decide about fetal rights, medicine has already granted unborn babies a unique form of personhood--as patients. Twenty-five years ago scientists knew little about the molecular and genetic journey from embryo to full-term fetus. Today, thanks to the biomedical revolution, they are gaining vast new insights into development, even envisioning a day when gene therapy will fix defects in the womb. Technology is introducing parents to their unborn children before they can see their toes. Expecting couples can now have amazing 3-D ultra--sound prints made in chain stores like Fetal Fotos. "Instead of some mysterious thing inside her belly, a mother and her family can now identify a little human being," says Bruner. In any other field of medicine, the impact of these dramatic improvements in treatment and technology would be limited largely to doctors, patients and their families. But 30 long and contentious years after Roe v. Wade, science that benefits fetuses cannot help but fuel ongoing political, moral and ethical debates.

Fetal surgery has raised the stakes to a whole new level. The very same tools--amniocentesis and ultrasound--that have made it possible to diagnose deformities early enough to terminate a pregnancy are now helping doctors in their quest to save lives. While fetal surgery is still rare and experimental, the possibility that a fetus that might have died or been aborted 10 years ago might now be saved strikes at the core of the abortion debate. And these operations also raise a fundamental question: whose life is more important--the mother's or the child's? While reluctant to take a stand in the political arena, doctors know they are players, like it or not. "We can be a lightning rod used to further a cause, either pro or con," says Diana Farmer, a fetal surgeon at the University of California, San Francisco, "but you can't let that deter you from your mission as a physician."

For decades pediatric surgeons like Michael Harrison, head of UCSF's Fetal Treatment Center, agonized over their inability to save babies from deadly defects after birth. Since 1981, when Harrison performed a pioneering in utero procedure to treat a fetal urinary-tract obstruction, hundreds of fetuses have undergone treatments ranging from tumor removal to spinal-cord repair. Some operations have been dramatic successes, saving the lives of babies who would otherwise have died. Others have been heart-wrenching failures. In no other medical area are the stakes--two patients, not just one--so high. Now the first rigorous National Institutes of Health-sponsored trials will put prenatal medicine, including the spina bifida procedure, to the test. "If there's not a clear advantage," says Farmer, "it's not worth putting the mother at risk."

On the streets, the womb has become a political battlefield. In the OR, it is a medical mine field. Fetuses are moving targets--just locating and positioning them is like trying to catch fish underwater. The placenta, the fetal lifeline, can develop anywhere in the uterus, obstructing access to the fetus. A single nick in the tissue can put the lives of both fetus and mother in danger. Amniotic fluid, the liquid that cushions the growing fetus, can leak to perilously low levels. And preterm delivery, which inevitably occurs because of the disruption to the uterus, is the Achilles' heel of fetal surgery, increasing a baby's likelihood of everything from lung problems to learning disabilities down the road. Bold and entrepreneurial by nature, fetal surgeons have endured the skepticism, even hostility, of colleagues for years. Early on, "folks thought we were nuts," says Dr. Scott Adzick, head of the Center for Fetal Diagnosis and Treatment at the Children's Hospital of Philadelphia (CHOP). "Some still do."